I am new here but have been through a lot with doctors here in NYC and in Germany. I need some advice please. My mind is losing it. Below is my story. A little long but please read, I really need advice.
I was diagnosed in March in Berlin, Germany (American living abroad) with having a past Borreliosis infection by Western Blot. At the time I was unaware of what Borrelien(as written in German)on my test was. I was told by the doctor there that I had been bitten by a spider at some point in time and that the infection was no longer active. Though I knew a bit about Lyme I was unaware this was what the doctor had seen in a test. At the time I did not make the connection that the tick is from the spider(Arachnid) family of bugs. I suppose the doctor there did not know the translation of Tick. From her passive way of explaining this I did not further look into the situation until months later when I started to feel not so good from my normal crappy aches and pains which I related to getting old(going on 40 this year).
At this point I researched Borreliosis and realized that this was Lyme disease. I decided that I would seek a retest in NYC on a pre planned visit that I had a few weeks away. Once again the Western Blot showed past infection. Having to soon go back to Berlin and also reading the CDC vs ILADS war I decided to seek medical assistance back in Germany. Initially I went back to the doctor there who first diagnosed me. She gave me a prescrip of (200mg a day)Doxycyline to take for 6 weeks. On the third week I was referred to a Borreliosis specialist there. On the first visit to him I was experiencing at the time some pretty hard herxes from the Doxycycline. The doctor told me he thought I was having side effects from the doxy. I disagreed and said it was a herx. He said no trust me. I have a better drug that will reach deeper into the tissue cells called Minocycline. I accepted his prescript , checked online and saw it was in the same family as doxy and started to take the Mino once a day at 100mg. After three weeks I was still not getting better.I suggested to the doctor that the dosage was not high enough and he agree to extend it to 200 mg at 6 weeks more.
I wanted to wait a few weeks to restart the treatment as I was in the middle of traveling to Japan for a week and then coming back to NYC for two months and did not want to deal with herxes on the road. I thought to start this next round of Mino treatment when I arrived in NYC and could rest. I also thought to seek out specialists here as my hands, feet were feeling a lot of numbness and lots of aches on the rest of my body plus the usual fatigue.
The first thing I did which I knew would probably not work out was see an infectious disease doctor. Immediately I became stand offish when she said I had already taken more then enough antibiotics and that she felt it was not the Lyme anymore but probably CFS or Fibromyalgia.. I suggested to her that I had not been checked for co-infection and asked for her to at least check me for these. The test came back being exposed at some point to Babesia but the test did say "Past Infection" . She then did a blood smear which also came back negative. The ID doctor then prescribed Atovaquone and Azithroycimyn for seven days. I switched off tge Minocycline after being on this new round for 12 days. Within 3 days of being on the meds for Babesia I came down with severe stomach cramping that lead me to the hospital and having to be put on Morphine to relive me of a severe pain. The diagnosis was that I was severely constipated. I was taking a probiotic but perhaps a stool softner should have been as in the mix. So I stopped this Babesia medication after the third day and also the Mino. I have not been on any drugs in a month now. I do feel a little bit better but their is still some residual effects.
During this last month I had seen a Neurologist who seems to think outside the CDC box a bit but is still bound by their protocol. She ran a neuropathy test and and MRI of brain and Cervical spine. All showed inconclusive to any neuropathy and neuroborrelisis of brain. She said if my problems persist she would like to put me on Rocephin but this would require a spinal tap since their is not evidence to prove to insurance companies I have Lyme. I decided to skip the spinal tap as I have to go back to Germany anyway and it seems the doctor I have there does not need to make this test to put me on Rocephin. Besides the Neurologist I also saw a Rheumatologist who said I had no signs of arthritis.
In the meantime while still in NYC a friend hooked up a visit up with me for a doctor way out in Long Island where Lyme is much more prevalent. This doctor I was told was very knowledgeable on Lyme and would give me the treatment I sought. So I came in hand with the Joseph Burrascano treatment guideline and asked for his Amoxocillin treatment that he states is bacteriostatic. Well immediately the doctor said I follow CDC guidelines and then an argument began. First it was about my test showing a negative IGM. Then it was about longer term then CDC antibiotics.. The first question he asked me is why do I think the CDC guideline would not be correct. My response was I don't trust our government. I then asked him if he knew of Shelter Island(one of the highest per capital of Lyme patients in USA), Lyme CT, Plum Island and the high rate of Lyme in areas close to the proximity of Plum Island. He said to me he read Lab 257 and was in agreement that Lyme probably came from there. So I then said why should yourself & I then trust the CDC. At this point he said he could not prescribe me more then 2-3 weeks of Amoxicillin at 500Mg. I took the prescript from him and walked out frustrated with having partial antibiotics. If I am going to take anymore antibiotics it needs to be at an LLMD level and not this CDC nonsense. I will try some more docs in Berlin before I cough up for an LLMD here.
Ok so some questions
Can some recommend me an LLMD in NYC?
I am curious to how expensive antibiotics are when going through and LLMD. Can an LLMD prescribe medication through a pharmacy?
Two tests from different labs show Babesia as past infection. Plus blood smear showed negative. Should I still be concerned about this?
Is it common after stopping antibiotic to feel not so great for a few weeks then feel better. Possible ABX Toxicity problems?
Also I am a little confused about my Western Blot tests. My IGM shows only one band being reactive(23 KD)
while IGG shows positive with bands (18 KD, 23 KD , 39 KD, 41KD, 58KD, 93KD)
I believe because of the Babesia coinfection that all of this goes back to at least May 2008 for me when I was walking in the woods with a friend in southern Massachussets. Though Borreliosis is common in Germany. Babesia is not common at all in Germany and is most prevalent in Southern New England. I believe from the progression of my health problems that it goes back to this time. Does my Western Blot show possible Chronic Lyme Infection. I am under the understanding that you need a positive IGM to have Chronic Lyme. Not sure the truth in this.
Please help me with these questions. It would be utmost appreciated.
Posted by sixgoofykids (Member # 11141) on :
Welcome to Lymenet. Sorry you have the need to be here.
I would post in seeking a doctor for a recommendation of an LLMD near you. There are people with lists who read that forum.
Yes, you should still be concerned about babesia. An LLMD will be able to tell you whether you have an active babesia infection or not based on your symptoms.
EITHER IgM OR IgG positive indicates exposure. A Western Blot shows that you were exposed to Lyme Disease and have an immune response to it. I was also IgG positive and IgM negative.
You do not need a positive IgM to have chronic lyme.
BTW, if you're interested in alternative treatments, I had an alternative treatment in Pforzheim, Germany. I blogged about it in my blog listed below in Oct. 2008. I won't tell you all about it here since you're asking about ILADS treatment. Posted by S-Lymed (Member # 30010) on :
@six...
Thanks for the advice. I will check your blog out about alternative treatment as well. I took a quick scan and have read previously heard of the Bionic 880. I will read further this evening.
Their was one other question above that I am seeking an answer for. I stopped antibiotic treatment on Dec 9th. I am feeling a little better in the last week. Can their be a month period of toxicity from ABX in the body after treatment stops?
Also my vitamin D level was low and I was put on a 50,000 IU pill once a week. I am wondering if this has to do with feeling a bit better.
Posted by sixgoofykids (Member # 11141) on :
Abx are toxic, Lyme is toxic, either could cause toxic feelings. Plus when you're not actively killing off the Lyme you generally feel better.
The vitamin D may be helping.
Posted by S-Lymed (Member # 30010) on :
Thanks your information is very helpful.
If you don't mind me asking what is the general cost to see an LLMD for the first time. How do you go about buying ABX that are only prescribed? Is an LLMD allowed to prescribe drugs?
I am thinking to comeback from Germany again in a few weeks to seek an LLMD if I cannot find a doctor to help me there. I am tired of feeling not so good.
Posted by TF (Member # 14183) on :
Lyme specialists are regular doctors who know a lot about lyme disease. They write prescriptions for the patient like any other doctor.
You get the prescriptions filled at any pharmacy. If you have health insurance, your share of the payment is generally low. Only certain drugs are expensive, like Mepron for babesiosis and IV drugs.
Most oral medications are available in generic form, so the cost is minimal.
A good lyme doctor can charge $700 to $1,000 for the first appointment because they spend so much time with you at that appointment. (Maybe 3 hours.) Next appointment is about half that amount. Routine monthly appointments that take 1/2 hour are even less.
The doc is the key to getting rid of this disease. I can't emphasize that enough. The doc is the key. You need a doctor with a lot of expertise in treating lyme disease (like, at least 10 years of treating many, many people) to get rid of it for you.
Many doctors treat lyme disease, but not many know how to get rid of it for a person. You want a doctor who has gotten rid of lyme for at least 3 people you know. This way you know he knows how to get rid of this disease.
I got rid of lyme, babesiosis, and bartonella by going to a doctor who followed the Burrascano lyme treatment guidelines.
Burrascano was a lyme disease pioneer and is the lyme guru in the U.S. and the world. His treatment guidelines are followed by doctors all over the world. You can read them here:
I went to 2 other lyme doctors before my Burrascano type doctor. They were not able to cure me. You can waste a lot of years with these lesser doctors.
Then, I called some lyme support groups and asked for a doctor who followed Burrascano. I went to him and in 1 year of treatment I was rid of all of my diseases. In March, it will be 6 years since I completed my treatment and I am still symptom-free, enjoying my life.
Now, I hang around LymeNet to point people to the good doctors so they don't have to waste years in treatment like I did.
See "Support Groups" on the left of the page to find out who is getting people well and who follows the Burrascano guidelines.
Study the Guidelines yourself and compare your doctor's treatment of you to the guidelines. The Burrascano approach is 4-pronged: medications, supplements, diet, and exercise. It takes all 4 to get rid of this horrendous disease.
Posted by Robin123 (Member # 9197) on :
Hi - hope you've gotten some LLMD referrals by now - just wanted to add that in answer to your question about the Western blot test results, you have many positive bands.
You can read about their meaning by going to the top of Medical Questions and clicking on Quick Links to Popular Topics, and then click on the one about the meaning of the Western blot test.
Posted by S-Lymed (Member # 30010) on :
Thanks TF, Robin.
TF I should say you are quite an amazing person to come in here and help others while you are free of this for so long. Too often have I read Lyme forums and simply felt a bit hopeless from not hearing many success stories. I started to think after awhile that people must be getting better but just move on without looking back. I think it is so important to have people around who can give hope. You are doing a great job with this for me right now.
I already own printed copies of the Burrascano guidelines. I also watched a great video interview with him on Youtube a few weeks back. The man is a genius. The fact of the matter is the Infectious Disease doctors are the real quacks in treating this disease. I am in disbelief in how they view this disease. Their is nothing worse then a doctor having no answers and making you feel psychosomatic.I have never felt bad in my entire life up until this infection and I'm proof positive that is the cause. Not because my mind is playing tricks on me.
TF once again thanks for all of the above information. Cut, paste and saved.
@Robin, thank you too for the links. Reading this next.
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